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Here's the original question I asked the group:

> This question is for those of you who have had biopsies of DH and confirmed
> your diagnosis that way. When do you go to the dermatologist for the biopsy.
> When it first starts itching? When it gets scabby?  And, given that there's a
> relatively short window of opportunity, how do you arrange it?  So, do you go
> see the doctor and arrange that they'll fit you in if you have an outbreak?

I was surprised at the varied opinions about where & when the biopsy should be
taken. Several people said that it should be on the blisters and about an equal
number said next to or near the blisters (which is what I had always thought).
Several people said you have to go when the outbreak is occurring while others
said that since it stays in the skin, you can go any time & just show the doctor
where the blister was when it was active. I have so many scars from these things
that that wouldn't be difficult. Excerpts from the responses are below.

Thanks to every one who took the time to respond. I sure do appreciate it!

Summaries of responses:
First & most obvious (but not all that easy): Find a dermatologist who knows
about Dermatitis Herpetiformis

There were differences about when and where to be tested.

    -- come in when the DH was a blister form

    -- taken from the uninvolved skin near but not on the effected skin.

    -- the doctor usually takes a biopsy of one of the blisters caused by DH or
a piece of the skin near the blister. Some dermatatoligists use an iodine patch
to cause a blister that can be used for a biopsy.

    -- the biopsy should be taken from the skin not the lesion.  It can be
done even if you have no rash

    -- DH can stay in the skin for up to 20 years, so all you need is to
remember where the sore was and the Dr. can biopsy that spot.  The problem is
there are relatively few labs that are any good at reading the results. [Thanks
for the listing of good labs!]

    -- I went when the blister was quite obvious (and very itchy); I would try
to arrange ahead of time for an "emergency" visit by explaining the biopsy needs
to be done when you have an outbreak, which can't be predicted.

    --  [The doctor] said the next time I had an outbreak, to call his office
and they would fit me in. This is what I did and the first biopsy was not done
correctly and was negative. It was taken from the actual
lesion and from the knee.  The best way is from the elbow and perilesional, in
otherwords from the skin next to the lesion. This biopsy was positive for DH and
I was put on the gluten free diet.

    -- the biopsy should be taken from the skin not the lesion.  It can be
done even if you have no rash

    -- Mine was diagnosed a few days after a breakout

    -- I was biopsied during breakout, although some were drying up but the Dr.
took it from a fresh one.

    -- When I had my biopsy, I was having new blisters every day, so it was easy
to do the biopsy. The site she biopsied was newly blistered, not scabbed.

    -- My derm wants to test me.  He says call and then just drop in when the
blisters first form - before you scratch them -so he can get a biopsy. [I can't
imagine how you can NOT scratch them!!! I don't have that kind of will power.]

    -- You need to have fresh blisters that haven't popped or scabbed over.  The
fresher the better.

    -- My dermatologist took biopsies of unbroken blisters and sent them to a
lab in San Francisco, CA.  ... As far as I have been able to tell, the biopsies
must come from an unbroken blister (she took the whole thing) to do the
immunoflourescence test.

    -- I remember him saying he had to find a bump that was not broken and
scabbed over in order to do the 'punch' biopsy.

Again, thanks everyone!

Sally